My March 14, 2015

One year ago right now Lily was getting her 3rd blood transfusion and getting ready for her first bone marrow biopsy. I remember everything so clearly, but the main thing I remember is just how much happier and hyper lily was. After getting some fluid and blood she perked right up and was laughing and playing. Its the happiest and healthiest that she looked in a while. We were laughing and playing all morning in our room still waiting to hear what was really wrong. Next we would go in to the PICU for the biopsy and Dr. Camilo would be there. He would looked at me and asked me what I knew. At that point it was just that she was anemic and had immature blood cells but I didn't know what that meant exactly.I was sitting on the hospital bed with lily on the bed between my legs, my arms wrapped around her, and my head resting on her head, and he looked right at me and said "Your daughter has leukemia. We don't know exactly which kind until the results for the biopsy comes back but we do know that it is leukemia." I don't remember details after that. I know he left the room for a minute, I think. I do remember kissing Lily's head and just saying "why did it have to be that?" "Anything but that, Why?!" I just kissed her head over and over. Then they all came back in and said that they were ready to start the procedure. I feel like I just flew back to our room. As I'm walking back in 4636 the phone rings and Its Jami. I tell her, "She has it, She has leukemia. She really has it." Then with out hesitation she says "I'm coming. I'm coming down there." I was so relieved I didn't even have the strength to argue. After that things get blurry again. I think I mostly would just lay in bed with Lily just forcing her in my arms every second.


Now that its been a year life is so different! Now procedures like this are out patient, and routine. Low blood counts are always scary but they are somewhat anticipated and expected. Chemo is taken everyday which means a daily 3 hour fast for Lily. She is doing so well but still no preschool or jumping on the trampoline. We wear masks everywhere we go, and we hardly complain about it. Our hair was lost, but now is found!, and she has the cutest pixie cut hairstyle that is to die for...(too soon?) We are almost 4 now and acting 16. We are starting counseling and we are all working to get back to happy healthy place. Things are getting easier, but we are still fighting. I never thought the year mark would ever come, but we are living it, which means to me that we have overcome the first hurdle, but we wont stop fighting until they are all defeated.

My March 13, 2015

Today I have just tried to keep myself busy. A year ago today lily was admitted into the hospital with in 4 hours of initially seeing the Dr.. I will never forget the startled look on his face as he entered the room and saw Lilys pale complexion for the first time. Still looking back I can't believe I let her get so pale without any concern. About this time we were headed into the hospital for her second blood test in a row as the first was so off of normal they thought that they had a contaminated sample, and by 8:30 we were headed for a direct admit into room 4636 (which we have come to realize is like the official chill spot for all cancer kids, as I don't think I know of one kid that has been admitted that hasn't stayed in that room) 🙂 I'm remembering how calm I was but still so scared and worried. Now it's been a year, and I'm still scared, and worried, but the difference this year is I can actually see that light at the end of the tunnel. I see the end coming closer and I can almost imagine what life will be like after all of this. So much has changed in the last year. Nothing is like it was. We are pushing forward and determined to live a fuller life this year as health allows. Keep praying and keep supporting. Our journey isn't even half over, but the rough seas should be over. And we are hoping to just cruise by and enjoy the view

Finally some Fun

Okay so it's been a month since my last update so I figured its time to write. What a crazy year this has been! This past month I have just tried to focus on getting life back into some type routine, implementing a new schedule, enforcing some discipline, and getting my house off the verge of being asked to star in an episode of hoarders. Now that things are a little more back to normal I can finally catch up on my blog and my crafts!

Lily has been doing really well lately other than some red dark chemo eyes as we call it. She is in interim maintenance 2. She has done this phase before but we will finish chemo at a higher dose. She gets chemo every 10 days and each time they up the dose of one of the chemos by 15%. Because of the CMV that she got before they have started giving her an immune booster every 4 weeks which has allowed her to keep her blood counts up enough that we haven't had any delays in treatment. (On a side note I'm finding out in all this that Lily doesn't recover her counts very quickly at all! It's not really been much of an issue but her Dr. very subtly mentioned it once and based on some of Lily's friends I've realized this) She has appointment on Friday this week and then we get ready for maintenance!!! Maintenance will last until May 2017 and I don't have all the details yet but I know she will be taking oral chemo everyday, and will be alternating between steroids and a different oral chemo for the other weeks of the month. Every month also starts off with spinal tap, and chemo in the spine and IV. We have been told before that once we get into mait. that we will be able to put her in some classes and dance and swim lessons are the top of my list! We still cant do school though for a while :(

Since Lily is finally feeling better, and since it has been so long, we have gotten to do some amazing things. Lily was given the opportunity to go see  Disney's Frozen on Ice and she LOVED it! It all started because I had entered her in this contest to win a trip to Disney and they saw her video and wanted to give her tickets. We sat right up front which was so awesome. Then they did a news interview and gave her the chance to meet Ana and Elsa back stage. Lily was so cute when she went up to Ana to talk to her! It was such a fun night! Here is the link to the news interview.
Fit for a princess

We also got to go to Boise State and meet the football team and got most of the team to sign a poster for Lily. Its hard to remember with how HUGE these men are that they are just still young men! at only 18-21 years old and yet they were so sweet to Lily. They played with her and talked to her and would have hugged and held her if she would have let them. We love getting to do things like this because it gives us things to look forward too and being such big Bronco fans its cool to see your teams coach and players in person.

Okay we do have one more big announcement!.... (No I'm not pregnant! Are you crazy?) Lily has official been granted a wish from Make-A-Wish and for Lily's 4th birthday and Jakes 30th birthday we will be at Disney World!!!! we are going April 13th-19th 2016. We are so dang excited I can even tell you. We get 3 days at Disney World, 2 days and Universal Studios Orlando and a day at Sea World. Because we are going there for a wish we also get to stay in a the Give Kids The World Village inside Disney that is only available to Wish families. It gives us free meals, fast pass on the rides and the use of all VIP lounges and family lounges. The village is there just for wish families and I cant think of anything cooler than staying in the village with other wish families all across the world!

After this last month I have been able to once again see all of our blessings. I know I shouldn't admit out loud that its was hard to see the blessings before, but it was. We just owe a huge thank you for everyone that has bailed us out in the last couple months. Its true what they say about how money comes and goes, they just talk about how hard it is when it goes. We really are so blessed for our family and friends, MSTI peds, 4th floor peds, and all the people that have given us the breaks from life that we needed. We are back in areally good place and we would like it to stay that way!

Its been awhile

So I have been in a little bit of a slump lately and haven't really had much to write about except everything woe is me. I am still kind of slumping but its getting better. Lily was in the hospital so much in the last two months, and, so much has happened that I just felt/feel so out of control with everything. Then to make things worse I would sit there and compare myself to everyone around me and think "why can't I keep my house clean like her?" "Why don't I have to energy to work out like she does?" "Everyone is going to think I'm lazy and a bad mom because I couldn't cook tonight." I just kept bringing myself further down and down. Now I truly feel like I'm past my epic pity party but there are things I still don't understand. I hear a lot that people see me as this strong "warrior" that can "slay dragons" but I feel so opposite than that. I feel like the world around me is spinning a million times a second and I have to hold my family down, and, at the same exact time reach out of the spinning vortex at exactly right moment to grab whatever I can for everyone. That to me is chaos, not warrior.

But now things have calmed down and I feel less spiny. I have forced myself to stop comparing my life to everyone else’s and just focus on my family. It's helped me realize that my family IS making it. It’s not easy and it’s incredibly stressful but we are, and I do have major support from my family, and I mean MAJOR! They care and love all of us, and are truly selfless, and it just helps me realize that we are NOT alone in this.

Lily is doing so much better. She has started her second interim maintenance and gets 2 different chemos every 10 days. They up the dose of one the chemos by 15% every time. I know a couple of adults that have taken Methotrexate, which is one of the chemos that Lil takes, that is just makes them feel absolutely horrible, but Lily is so resilient! She sits on the couch for a day and then is up and talking and laughing and happy. She complained of a headache 2 days after her treatment this time but other than that no real complaints. All her tests and ultrasounds show no more liver disease and good enough blood counts to feel confident to move on with treatment. We have another appointment next Thursday and will check counts again.

I guess what I've learned over the last 2 months is not to judge myself based on what everyone else is doing. I learned not to judge others during the first month of Lily's treatment but I never really thought about myself. (shocker!!!) Self-criticism has been a battle for me my whole life, but now I'm truly starting to understand that everyone has their own battles, and not all wars can be won fighting with the same strategy. I've decided that I will keep my house healthy, but I cannot beat myself up if it’s not totally spotless. I will try to eat healthy and exercise, but I can’t hate myself for gaining a few pounds when I'm stuck in the hospital for 13 days, or have hospital appointments 2-3 days a week. I have to try not stress if a bill doesn't get paid exactly on time, because I have trust in myself and my husband, that just like always, we will find a way to pay it, eventually. So I guess for my sanity I have to focus on my full my time job which is to get and keep, Lily and Makinlee healthy, no exceptions. After that I can focus on my husband, my home and finances, and then myself. Now I know what most of you are thinking and quite frankly I don't want to hear it. I know I need to take care of myself or I can’t take care of anyone, that I fully understand, but that frame of thinking just proves my point in all of this. I have started to figure out the order of priorities I have to have in order to keep my life grounded and organized. It may not be everyone else priorities, but it is what is going to work for my family. Okay having said that, I am going to still take care of myself. I know I need some time away. I know that I need to spend some time each day/week/month where I can just relax and focus on myself and believe me when I say I am so willing to do that. I just know that I can justify putting myself  100% first, second, or third, all the time when my attention is desperately craved elsewhere. I have to find balance. 

I know that whether you have sick kids or healthy kids, sick parents or healthy parents, or sick friends or healthy friends, everyone goes through stages in life where one day you have your shiz together and then then next day it has hit the fan. Lily having cancer doesn't change that for me. It just changes the degree at which I have learned to appreciate and understand the lessons that I will learn this point out. Now, again, having said that, the next lesson I've learned over the last few weeks is selflessness. I personally haven't mastered this lesson at all. I know this because I’ve learned it from all the people I know and love, and even some people I don't know, that have given to us in our most desperate time of need. I can’t even fathom that at 10 years old, or while having to provide for a family of seven, that some people have truly seemed to have mastered the extremely rare gift of complete selflessness. I am extremely humbled to have such an amazing family. I hope and pray one day I can help return the blessing to them that they have given to my family. I truly believe in karma, and I know they have amazing blessings coming. Thank you to Matix the whole Hull family, and all her friends, for all the support, and thank you to Jami and James for the incredible bailout, and ultimately the start to my new trust in life and humanity. I love my family, and not just the family I live with, but with my many parents (blood and marriage), my many brothers and sisters (blood and marriage), and my friend family that has been the constant life support that we have needed. Without you I can honestly say that the Ross family could not have made it this past 2 months without you. Thank you for giving us everything you have, including one of the most precious gifts that a desperate family could receive, Hope. 

Finally Home

So I have been super slacking on my blogging this last 2 months, mostly because I have been at the hospital and haven't had my computer. But I also think that I haven't because its hard to only write bad news. Now that Lily is officially done with Delayed Intensification I'm praying for no more drama! I think that everyone in my house is ready for things to calm down and go back to whatever normal is. I don't want to dwell too much on what happened in the hospital because its still so stressful to think about, but I will give you the short version. Lily was taking an oral chemo (Thyoguinine or 6TG) in her last treatment phase and it caused her to develop a very rare but potentially serious liver disease called Veno-Occlusive Disease or VOD. Its basically where the little blood vessels inside your liver form little clots that wont allow the blood to flow properly. If the blood cant flow through it than the liver cant accept any fluid to flow through it and filter out to the rest of the body. We took her into the ER initially for dehydration and they kept her one night, gave her 24hr of IV fluid, and sent us home. The next morning her stomach was very engorged and firm so I took her back in. All the IV fluid that they had given her just resorbed into her abdomen where it was just sitting and unable to be used by the body. An ultrasound was done to confirm her VOD diagnosis. After we knew what we were dealing with her Drs had the task of doing a large fluid shift in her body. She was given a diuretic to block sodium at the bottom of the kidneys, then she was given a protein which sucks fluid into the blood vessels and then another diuretic to flush everything out. After three days of this she was able to loose over 6 lbs of water weight. Lily only had a moderate case of VOD and still doesn't have 100% normal liver function but the VOD did reverse its self and shouldn't ever be a problem again. It took about a good week in the hospital before we really started to get some positive responses form the Drs that the VOD was reversing permanently. On top of all that we also had to deal with Cdiff which is a contagious bacterial infection that you get in your gut. Most likely Lily got it from taking so many antibiotics for so long. So she was put in isolation at the hospital which means no visitors from other patients, no playroom, and if we left our room she wasn't allowed to touch anything. Fortunately her Dr. felt bad for us and said that we could do outside! That was so amazing. One of Lily's friends actually brought her a huge bag of 'Frozen' things, stickers, place mats, coloring books, and her favorite thing a singing Ana dress. She put it on for our trip outside and stood on the grass and sang to everyone at the hospital. It was so adorable.

Okay so I'm just so glad to be HOME!!! We went back to clinic yesterday and they said that she wasn't quite ready to start the next phase of treatment yet so we get a week off and I couldn't be more happy. This is going to be a week to play! We have been cooped up for so long we just want to get out and enjoy the weather!

With all the big and little complications that she has had lately we are really understanding how lucky we have been up until now. I am very hopeful that we have gotten all of our big drama out of the way now, and things will be smooth sailing from here on out. We truly appreciate all the love and support we get from all of you and I'm really hoping that my posts from now on can be fun and uplifting!

Lazy and Unstructured

I came to the realization today that life is nothing at all what I would have planned it to be. I suspect that at some point everybody will come to this realization in their lives but for me, it was still a shock. I was standing in line at Winco to buy a few groceries and I realize I'm wearing yoga pants with yogurt stains on them, a cheap tank top, and my hair is a humid frizzy mess. Makinlee is also covered in yogurt and somewhat causing a scene rocking back and forth in the cart yelling. Then I have my tiny bald headed 3 yr old wearing a bright pink hat, a medical mask, and brown cowboy boots, with a white tank top that unintentionally allows her port access to hang out and black sparkly leggings. Let’s not forget about my husband, wearing his basketball shorts and flip flops which I don’t usually associate with being too informal, but somehow it seems less organized when you put everything together. Now honestly, this is not untypical for my family, but as I look around the store, I'm realizing that we are the people in line that most others (including myself in my pre ALL life) would have judged me as a lazy and unstructured mother. I realize at that moment today that my life is just that, a little lazy and unstructured. Allow me to elaborate...

Lazy; having 2 kids in diapers, (one of which has recently discovered that she can move around pretty quickly and that its fun when mommy has to chase her naked bum around the house) It’s not uncommon to find dirty diapers laying around the house in places other than the garbage can outside.

Lazy; when you do 2 weeks’ worth of laundry in 1 day but don’t get around to folding it so you spend the next week digging through the clean cloths piled on "the small couch"  until laundry time comes again and you decide you really should finally fold the laundry from the previous week.

Lazy; when you are so busy during the week that you eat out like 3 nights in a row because you are too exhausted to cook and subsequently don’t do the dishes the entire time thinking that since you didn’t cook dinner the dishes "aren’t that bad" and then when you finally do the dishes its 2 dishwasher loads full, which then again prompts the urge to eat out having just cleaned the kitchen and having gotten all the dishes clean. Vicious cycle

Lazy; putting chicken nuggets in the oven and cooking peas in the microwave for lunch because you are so ready for nap time so you can just sit after being up most of the night with a sick child. But then the guilt sets in that you are sitting on the couch instead cleaning. Refer back up to the laundry and dishes.


Unstructured; spending 13 nights in the hospital. Need I say more?

Unstructured; Coming home from said hospital stay and everyone in the family (besides our daddy who goes to work) sleeps in until 10am, takes their nap from 3-5pm, (excluding mommy) and then stays up until 9pm. Mommy is usually up well into the night. I think it’s got to be an actual syndrome, mommy-is-exhausted-all-day-until-the-kids-go-to-sleep-and-then-she-gets-a-burst-of-energy-so-is-up-all-nightitous.

Unstructured; going to the Dr. at least once a week and planning to spend all day there because the appointments can take anywhere from 2hrs to 6hrs easily.

Unstructured; having to go into the ER for every concern that comes up during nonclinic hours for something even as little as a minor rash, to UTI symptoms, to an unknown fever over 100.5 while neutropenic. Also expect either blood and or urine samples every time and it’s probably best if you just keep an overnight hospital stay bag in your car because its quiet likely that once you go in, its 2 days at least before you get out.

Unstructured; planning your day around having to give IV antibiotics at exactly 12:10pm because it takes an hour to go in and you have to give chemo at home at exactly 1:15pm and you dent want to have to give too much heparin (anti-clotting agent) through the port. Which is especially hard when you have an appointment with one specialist at 1pm one day and a different specialist at 1:15pm the next day.

Unstructured; giving your baby a bottle in bed (despite your best judgment and knowing the negative health risks associated) because that’s what she has gotten used to and sometimes you just need to focus on the steroid raged child in the living room and knowing you can only do that if you put the baby down for an early nap.

Unstructured; The million mixed emotions you feel as you take your 3 year old daughter to get her head shaved while she sits on your lap screaming, or to know that you are taking her to the hospital to get a lumbar puncture with intrathecal methotrexate and 4 other new chemotherapies and other drugs that are simultaneously going to make her feel exhausted and nauseous for days but also allow her to live for years.

You read all those facebook posts that say "enjoy every single second of life cause you never know when it will be your last!" (Which I fully agree on in so many ways) But also make me so sad because the thought of my daughter spending the last years of her life being spent in DRs offices being poked and prodded constantly, having no hair and not growing at all while still losing weight, and her having to miss out on normal 3 yr old activities like preschool and dance class makes life hard to enjoy. I prefer to miss those moments. With September being Childhood Cancer Awareness month I am even more emotional. We are 4 days shy of 6 months of treatment and I still feel so new at all this. Honestly the last 6 months have seemed like years and counting. But then I look at Lily. Strong, resilient, polite and ridiculously smart and its then I realize I have the duty, and honor, of calling this amazing human my daughter. Then I look at Makinlee. I peer into her piercing blue eyes, and see her humor, resilience, and forgiveness for the inevitable lack of attention she has to work through. I know with Makinlee it’s even more important that I show her how much I love her.

I honestly know, despite the fact that Lily is so torn apart from her friends, that I have to fully accept that this cancer situation isn't going away! I know I have to hit this thing head on. IT"S NOT EASY, but as parents it’s the only choice we have! So I guess if you are going to judge me for my house being a pig pen, or my whole family’s clothes being dirty when we are out grocery shopping, or my lawn not being mowed just go ahead. But I know that we are mostly just in survival mode and usually on the verge of laughing so hard you cry, which then turns into real sobs, or just going just completely crazy (and then no one is safe). I guess my point is I don’t have the time or energy to make my whole life the happy fun charismatic life I used to have, we are too focused now. But I will continue to smile. I will continue to laugh at funny movies and plan pranks and breakfast-in-bed for dad that gets to sleep in. I will still enjoy making Halloween cookies and shopping for a costumes, I’m still excited to sit at Thanksgiving dinner surrounded by family, and I will still get giddy while figuring out what gifts to give Lily and Makinlee from Santa that give them real hope.

I guess my goal this next month is to keep the hope and trust everything will get better. I trust life will send us down the right path and when this is all over, we will be a stronger family and love more deeply.

Meet Lexie

WARNING: We have an emergency news update- Due to recent behavioral changes brought on by a high dose of steroids I will now be referring to Lily as her alter ego Lexie. Lexie is very demanding and unwilling to compromise. She needs everything RIGHT NOW!!! Lexie requires that I have at least 3 food options available to her at all times throughout the day or night. If these demands are not met then Lexie starts screaming a series of chants, moans, and groans that can only be described as an ancient mating ritual. This will go on indefinably until Lexie either gets what she wants, decides she wants something else, or, very rarely, falls asleep. Lexie is very territorial and will pounce and attack if she feels threatened so its best to stay away until Lexie is gone which will probably be a good 5-7 days. We will update you more on Lexie as tonight program continues.

For some reason these blog posts are getting harder and harder to write. I don't know if its because we are in a really intense phase of treatment and I'm trying to pretend its not real, or because I feel... nope, that's it. I don't wanna believe its real. With no evidence written down it's not happening right?

I admit I was having fun writing about Lexie but the truth is right now I have one sick baby. She was neutropenic on Tuesday when we went to chemo and in this phase they just continue on treatment anyway. (Normal neutrophils-cells that fight infection, should be around 1400, they usually don't do chemo if her neutrophils are under 500 which is considered neutropenic. Lily was at a 370 and they did chemo anyway. I have to assume at this point that she no crime fighters left.) After chemo on Tuesday I watched the color drain out of her. She took a nap and when she woke up she was as white as a ghost. She has some color back now but still just pale with dark red circles around her eyes. I am glad that we get a break next week. We go in next Thursday to check counts and then if we stay on schedule and her body can produce more neutrophils fast enough we will be planning an over night stay at our favorite resort, St Luke's Children's Hospital around the 25th or 26th of Aug. If she is not ready then, we will wait until she is.

It has taken me until this last week to truly understand how sick she must feel. Mostly right now she just sits or lays down. She will play but she gets worn out fast. The other day I was cleaning and the TV was on. She came up to me and asked me to turn it off so I did. Next thing I realize its quiet so I went to find her and she had randomly made herself a bed on the floor and fell asleep. I was pretty shocked. Not that I blame her but for my 3 year old who hasn't even been sleeping at night, to just lay down and sleep means she is exhausted. She has still been like that ever since. Last night, like the creeper that I am, I just sat and watched her sleep on the couch. There was something contradictory about her face, Peaceful yet troubled at the same time. Its hard to imagine that combination on 3 year old without seeing it.

She will remain on steroids until tomorrow and then she is off of them until maintenance. Despite her being so worn out right now, she really has responded well to treatment so far and we really are lucky that we gone this far with out any big setbacks. The good thing about the steroids are that they do give her a small burst of energy for an hour or two after taking them. We will just continue to fight and stay healthy here and pray for more energy and strength.